FFC/Atlanta ??'s viruses, meds, Chronic Fatigue

Discussion in 'Fibromyalgia Main Forum' started by lillypad2, Aug 14, 2005.

  1. lillypad2

    lillypad2 New Member

    Does anyone know if ativan or prozac can cause chronic fatigue if taken for long periods of time, like years?

    I have anxiety disorder plus fibro/chronic fatigue. I have high levels of EBV, Chlamidia pneumonnia, mycoplasma (not sure of spelling). So I have started famvir then will switch to acyclovir because insurance wont pay for famvir. I've been feeling bad taking it for about 7 days, I can't even get to the dose she wants me to take yet.

    Does this cure EBV, or will I be taking viral drugs for now on? She will put me on somethning next month for the other stuff (wonder how long I take it). Does anyone know what? and did insurance pay for your prescription? Is their a generic I can ask for? Can you get rid of mycoplasma or chlamidia penumonnia?

    This is all new to me, kind of scary!! Did anyone feel better after taking viral meds? if so, how long did it take?
    Thanks
    lillypad2

  2. elsa

    elsa New Member



    HI Lillypad,

    I took valtrex when I was first diagnosed .... large dose 2xd. After close to a year, my doctor switched my to famvir because it supposedly works better for us.

    I have high EBV. Unfortunately for me, neither were helpful, yet I understand that famvir has helped many people. I don't know of any generics for it. Lucky for me my insurance paid for it. I didn't feel anything on them ... good, bad or otherwise, but if you have been feeling badly and flu-like this past week while on famvir , then it just may be working for you.

    Sounds strange, but if it is working then it is killing off pathogens that made you sick. The die off is called herxing. It sucks, but worth it. I almost want to say congratulations if that is what's going on.

    Mikie knows quite a bit about herxing. You could look up her posts about it or put the word in the search bar for more answers.

    I'm sorry I couldn't answer some of your other questions, but I hope this helps some.

    Take care,

    Elsa

  3. lillypad2

    lillypad2 New Member

    Was your EBV cured?
  4. lillypad2

    lillypad2 New Member

    Forget that question. What are you doing now for your EBV?
    Do you have other stuff?

    Lillypad2
  5. karatelady52

    karatelady52 New Member

    I've been going to Dr. Bullington also. I have EBV chlamydia pneumonia and CMV PLUS, the biggie, Lyme!

    She said we had to address the Lyme first so I'm on Biaxin (antibiotic which I hate because of Candida issues) and a product called Lumbrokinase. So, I guess I will be tired for awhile with the EBV (mono) and the others.

    I went to lunch with Lynn C. a few weeks ago. You should meet us sometime --- we had a good time discussing all our stuff.

    You could call the FFC and ask them about the Prozac making you tired. They are real good about calling you back promptly.

    Sandy

    Sandy
  6. lillypad2

    lillypad2 New Member

    Tell me what do you take for fatigue? Have you tried
    amphetamine salts? Well I did, just did'nt work. Made me really depressed and irritable. I'm suppose to do the shots, but my pharmacist does'nt have everything yet.

    Also, I would love to meet up with you, but I'm 4 hours away. My next appointment is 9-6 at 1:00 p.m.

    Are you doing better?

    Thanks
    Lillypad2
  7. karatelady52

    karatelady52 New Member

    Wow! Four hours away --- that's a long drive for you. Do you do it in one day?

    I haven't even heard of the salts. I really don't take anything for fatigue. I'm taking a hoard of pills (I'm sure you are too) from the bio-identical pharmacy. The only thing that helps a little so I can get my work done is the pain med --- Percoset. I'm taking a very low dose.

    Nothing has worked for me these past 3 months and I'm sure its because of the Lyme. The IV's at the center didn't help. I'm taking the glutathione shots and they don't help me either as far as energy goes. Maybe in a month or so the shots and IV's will start to kick in.

    My husband did tell me that I've been like my old self and had more energy today than normal. This is the first day that has happened.

    I'm on my 3rd week of Heparin shots -- my stomach is so bloated --- its usually flat. HOpefully, that will go away soon.

    I'm also taking an antibiotic which is making me nauseated. I guess its true we will feel worse before we get better. I've been on it for about 4 days.

    I don't know when my next appt. is. Dr. Bullington said in about 2 months to give me time to begin taking the antibiotic, Samento and a few others. Right now I'm going in every 3 weeks to check my blood to make sure it isn't getting too thin because of the Heparin.

    Maybe we'll run into each other or I can try to get in there when you go. Lynn has been a big help to me. It was fun getting together.

    Sandy
    [This Message was Edited on 08/14/2005]
  8. elsa

    elsa New Member


    Hi Lillypad,

    I just now saw your post. Sorry about that.
    I made a plan to help myself. Started by strengthening my adrenal gland with a whole food b-complex vit., 2000mg vit.C , alpha linoic acid , DHEA with pregnenolone gel. ( I
    have a frozen adrenal extract waiting in the wings if need be.)

    Next, I started on my immune system ... with alot of help from this board. I start slowly , with one supplement at a time. The first one was colostrum with growth factors. I herxed pretty good one that one! Pretty quickly after starting it too. On August 9th, I started a whey protein concentrate protein shake. It is the best sorce of l-glutithione I can think of. After a time on this, I will add Transfer Factor. One is specially designed to combat EBV.

    I already feel much better. When the anti-virals did not work for me, I decided to try and give my body the tools to fight it itself. I'm lucky in that I only have EBV to content with. Alot of people have so much more going on.

    While I was adding these new things to my protocal, my rx medications kept me going ... gave me the chance to get through the day.

    The most precious to me in the rx category is lunesta. After my sleep study, it was determined that lunesta was the right choice for me. I've been on it for almost 2 months now. No better tool to fight virals then a good nights sleep!!!

    I hope this helps some. Taking responsiblity for these illnesses and the research that goes into it can be exhausting and daunting .... but worth it. I'm heading into remission. Needing less of my pain medication and provigil. But most importantly, I much happier.

    We ( my doctor and I )haven't re-checked my EBV numbers in a while. I don't really need to. They will never go away, just reduce in numbers. Once a virus is there, it's there for live. Instead, I'm listening to whats going on with my health and body. I have been on the steady up hill climb with this illness since I stared the colostrum. Long, long 4 months ....but I'm getting there.

    Good luck to you. There are many members here who can help guide you and answer any questions you might have...me
    included. The only lessen I had to learn was this treatment protocal was going to take lots and lots of time.I didn't get sick over night and my remission isn't going to hit overnight either. Once I learned that ,there was no stoping me.LOL

    The four areas ( or rules ) of attack for me are: 1. sleep, 2.hormone HAPA axis , 3. immune system , 4.and repair and strengthen muscle tissue. Has been working so far!!

    I hope you feel better soon. Don't give up on the research and planning of your attack on CFS/FM. At times I felt like beating my head against a wall and other times I felt like crying ... wishing someone would hand me a list of things to do to get well. All those times of study have paid off. Thank God !!

    I'm not there yet, but I'm getting there one foot in front of the other and I am happier then I have been in a long time. The chronic pain, and "sick" is not with me every second of every day anymore. God willing I'll continue to improve.

    Good luck in your own search .... I'll keep you in my thoughts....

    Elsa

    Please excuse any typos you run across. I called myself proof reading this , but my bedtime med.has kicked in. Who knows what kind of proof reading job I did?!? LOL
  9. Mar19

    Mar19 New Member

    I am now currently taking famvir, not for EBV but for herpes simplex. I suffer from outbreaks of this every so often, and when I do typically they are very resistant and hang on for a *long* time. Valtrex just was never strong enough to fight it off.

    This past go-round when I started on the famvir I got quite ill -- nausea, diarrhea, headaches; you name it. My reaction was quite severe. I posted here, like you did, to inquire about the symptoms. The replies I received confirmed what I already suspected. The reaction I was having was herxing.

    Basically, the famvir was working quite well. Killing off lot of "buggies", the result was all the nasty symptoms I already reported. I had tried to lessen the dose, but then the herpes simplex would return w/a vengence.

    Before I posted, I researched the board and from what I read I surmised that maybe what I needed was to take probiotics -- beneficial bacteria to counteract the bad that was running rampant in my system. Again, the replies to my post confirmed that.

    I ordered Jarro-dopholis from the online store here. It did the trick! I can take the famvir now w/o all the miserable side effects.

    I've also noticed in the short time I've been taking it that I do feel better. Nothing earth-shattering or dramatic, but there is a marked difference with how my digestive system responds -- not only to the famvir, but to everything in general. I'm quite pleased, b/c to be frank, I really had my doubts about it. Besides all the aches, pains, fatigue, fibro fog, etc that we suffer w/these DDs I had thought that the digestive difficulties were just one more thing that I would have to endure for the rest of my life.

    Not so! I won't say I'm 100% better w/the Jarro-dopholis, but close enough! I'd highly recommend it.

    Love & blessings
    Mar
  10. taniar

    taniar New Member

    So nice of you all to share successes. Thank you
  11. ldbgcoleman

    ldbgcoleman New Member

    Hi Lilypad! I will be around on 9/6 if you want to meet. Maybe we can talk Sandy into joining us or anyone else who wants to.

    To answer you question. My real turnaround began when I started the antivirals. I am taking Doxycycline for Mycoplasma and Famvir for EBV. I felt like I had the bad flu for about 5 days. Then I started to feel noticeably better. I was improving slowly before but I'm dramatically improved now.

    A few words of caution. I have only been having problems for three years so these things are not nearly as imbedded in me as some and therefore I may be having an easier time getting rid of them. I have followed the instructions from Dr B exactly taking the supplements and heperin religiuosly and have been getting weekly Ivs.

    I will get the results of my retesting on 9-13 so we will see what is and is not working and we can tweak my treatment. I started in May and am just now to the point of retesting.

    This is a long road and takes some longer than others depending on what you have going on and how you respond to treatment. How much tweaking they have to do ect.. some of it depends on you. How you are controlling stress, pacing, ect...

    I had a slight flare over the weekend. I went off the Candida diet and cheated big time last week which tore my stomach up. I also was not pacing myself at all! I pushed way to hard and did too much. My husband kept telling me to slow it down. I also missed my medicine two nights in a row and ate dessert Sat night. The first time I have missed anything! The first sugar in 25 weeks. All of this effected me!

    I am trying to get back on track today. What we do has a huge effect on how we feel. I believe you have to be patient and give the program time to work.

    Good Luck to you and take care! Lynn
    [This Message was Edited on 08/15/2005]
  12. ldbgcoleman

    ldbgcoleman New Member

  13. lillypad2

    lillypad2 New Member

    I would love to meet! The only thing is I have a 1:00 apt. will probably get two IV's and then a 4 hr drive home, if we don't get lost again. Maybe I will have time to meet you and Sandy, if she wants to. I wish I could get an IV every week. I can only get down once a month. I know this will slow me down. I hope you have gotten back on track with your meds and your eating properly. It sounds like your doing good otherwise. I'm glad I went to the FFC. I was getting no help here at home.

    Oh, I'm sorry it took until today to get back to you. I got really tired and went to bed. I appreciate all your info. You take care of yourself.

    Lisa
  14. lillypad2

    lillypad2 New Member

    Sorry it took so long to get back to you. I appreciate your input. Are you not going to an FFC? Also, what do you mean you never get rid of EBV? I thought you could.

    Anyway my Famvir is lasting a couple of more days and then I am switching to acyclovir for EBV (because of Ins.) What about mycoplasma infection, can you get rid of that?

    I hav'nt had a sleep study done. Don't know why? I have hurt for years and this year is when I could'nt do anything after work but go to bed, I have never been so fatigued before. I had to do something, I felt like I was going to die. Thats when I went to Atlanta. I also have two sisters with this stuff. They are on disability and now they don't hurt. They are on ddb for other things, but they have always had fibro also. It runs in the family. My mom had it also.

    Talking about Transfer Factor. I'm suppose to be taking this too. Hav'nt got to it yet. What viral meds did you try?

    I am glad your feeling better. You sound like you know what your doing, just keep it up and take care of yourself. One step at a time.

    Thank you Elsa, you have been very kind.

    Lisa
  15. lillypad2

    lillypad2 New Member

    Thanks for your input. I'm glad your doing better. I'm taking Jarro-dopholis plus a whole slew of other things. I hope you keep getting better. I'm just worried that my next viral med, may not work. I can't take famvir but for about a week then I switch.

    Maybe things will work out. I am just tired of being sick. I have not been myself in quite a while.

    Your sweet, thanks for the info.

    Lisa
  16. ldbgcoleman

    ldbgcoleman New Member

    Maybe we could have an early lunch before your appt. I am a lucky girl I live very close to the center so I am very flexible. Sandy lives in Gainesville but goes every three weeks so maybe she could come that day.

    Where are you coming from?? Who comes with you?? Take Care and don't worry about slow response. I get busy or just donm't feel like going online some days. Take Care Lynn
  17. karatelady52

    karatelady52 New Member

    I just checked my calendar and my appointment is the week before on Tuesday.

    Darn!

    Sandy
  18. elsa

    elsa New Member



    Evening! Epstein Barr is a virus ... as you know. A virus is different then bacteria in that you cannot "kill" it. Once a person comes into contact with a virus .... some form of it will always be present in blood work. 95% of American population will shown ebv in their blood work. For us, however, something has come along and reactivated it. Thus, making us feel sick.


    I'm not as knowledgable on the mycoplasms. Mikie could answer anything you ever wanted to know about it. Why don't you post her ... or look her up in the search.


    I don't go to the FCC centers. My doctor and I work together on my treatment plan .... which, as it happens, is very similar to FCC's plan. Good luck with Atlanta.

    I have tried valtrex and famvir in the past without luck. The colostrum, whey concentrate and up coming Transfer Factor are my best bets.

    I hope you are doing well tonight. Talk to you soon...

    Elsa

  19. lillypad2

    lillypad2 New Member

    Whats your phone number and I can call if I get in before 12:00 and we could meet somewhere close and have lunch. My husband will be with me. I will call also if I can't meet you, that is if we are running late, or you could come in FFC and see me while I get IV's. That could be possible, last time I was there for 5 hours.

    Lisa
  20. lillypad2

    lillypad2 New Member

    Maybe we can meet at lunch, if I get there on time. I will try to get in by 12:00 or 11:30. Give me your number and I will call when we get there, I will also call if I can't meet you in time for lunch. If we can't meet for lunch, maybe you could come in FFC. Last time I was there 5 hrs.
    Oh, my husband will be with me.

    Thanks

    Lisa